Engaging people with lived experience (PWLE) of mental health and
substance use challenges and their family members in research is a growing
priority for researchers, institutions, funding bodies, and PWLE themselves.
However, historically, engagement has sometimes been limited by
challenges such as tokenism, unequal power dynamics, and insufficient
support for the PWLE engaged in the research. The Best Practice Guidelines provides recommendations for the engagement of PWLE in mental health
and substance use research. We use PWLE to include family members, who
have their own lived experience.
The Guidelines emerged from a three-round modified virtual Delphi study conducted with researchers, research engagement staff, and PWLE, including families. The study was conducted in 2024 with 61 participants (35 PWLE including family members, 26 researchers). Participants rated the importance and clarity of each of the items and provided open-ended responses to help shape the final Guidelines. After each round, items were deleted, added, and reworded for clarity.
PWLE advisors were part of the research team that conducted the study. They were actively involved in planning the study, reviewing each round of data, developing and rewording the recommendations, and reporting on the results. Both the study process and the final Guidelines thereby reflect the priorities and perspectives of PWLE.
The Best Practice Guidelines cover key aspects of engaging PWLE in mental health and substance use research. They are designed to support research teams in integrating PWLE in all stages of research. Research teams are encouraged to read through the Guidelines, see how they apply, and use them to support their PLWE engagement activities. While it is possible that some items do not apply to certain situations, they are designed to be as broadly applicable as possible. We encourage research teams to consider how the items might apply to their situation and use them accordingly. The recommendations are grouped into 5 sections taking readers through the stages of a research project. Each section starts with a brief introduction, followed by specific recommendations.
Our team invites your feedback on these Best Practices Guidelines, including their clarity and applicability, as well as any information that might guide future iterations.
Download the PDF of the full report on Best practice guidelines for the engagement of people with lived experience in mental health / substance use research. You can also download the full report in French: Lignes directrices en matière de pratiques exemplaires pour l’intégration de personnes ayant une expérience vécue aux recherches sur les problèmes de santé mentale et d’usage de substances